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Newly diagnosed and confused over treatment for lichen sclerosus

Posted by ronag @ronag, Jan 24, 2023

I've been diagnosed with lichen sclerosus. I have questions as to what is the best treatment: which steroid and at what dosage. My gynecologist initially prescribed mometasone cream 0.1% twice a week. This didn't really control the itching. My dermatologist is recommending clobetasol ointment 0.05% once a day for 2 months, followed by twice weekly forever. Itching, while not completely gone, is certainly more controlled after a week's treatment with the clobetasol. However, I'm a bit concerned over using it daily for 2 months. Can you please share what's worked for you? Can I expect to be using a steroid for life? To throw into the mix--I have long covid. Thank you for any help in navigating this.

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ronag | @ronag | Nov 2, 2024
In reply to @willows "I started with twice a week from the outset. This was because I had had LS..." + (show)
Profile picture for willows @willows

I started with twice a week from the outset. This was because I had had LS for years before getting a proper diagnosis and at that point my skin was very thin and I expect my dermatologist wanted be conservative in her approach. In other cases, if the woman has thicker or less fragile skin a more aggressive treatment might be suitable. I would ask Why a given treatment is being recommended for you. Also, if a little bit will do the trick, so much the better, why use more. If a little bit doesn’t do the trick, time to re-evaluate.

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Thank you for your reply. I must admit, I've been slathering the clobetasol on twice a week. Am I putting on too much? Possibly. Labial atrophy is present. My semi-annual gynecologic appointment is next week. I'll discuss the issue of quantity with her. I do find that adding an estrogen cream twice a week (not the same days as the clobetasol) has helped with the thinning. If I stop the estrogen, more atrophy occurs.

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cher51 | @cher51 | Nov 3, 2024

I use the Clobetasol when I have a flare up. When the symptoms go away I stop using. I use as needed.

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marquis113 | @marquis113 | Nov 3, 2024

I have the same treatment. Was told this is life long! I also alternate estrogen and clobetasol. Was told I only need a dime size application. Relieves itching and burning.

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jacee70 | @jacee70 | Nov 30, 2024

I have learned so much already from reading previous posts on this site, thank you! I was recently diagnosed with LS, however I know I've had it for many years. Previous gynecologist did a biopsy but it was inconclusive. I did ask her if it was LS, but she said not likely. Used an OTC for a while for the itchiness but gave up. Wish I would have sought a second opinion long ago. New gynecologist prescribed Halobetasol ointment 2xday for a month, then every other day for a month, then once a week. After the first month, the itch is no longer an issue, however has as anyone ever developed a rash from the ointment? After using the ointment for several weeks in the perineal area, I developed a rash between my cheeks. I'm thinking I may have applied too much and extended past the treatment area. I'll be reaching out to my doctor next week but thought I'd post here as well. Thank you!

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ronag | @ronag | Dec 1, 2024
In reply to @willows "I started with twice a week from the outset. This was because I had had LS..." + (show)
Profile picture for willows @willows

I started with twice a week from the outset. This was because I had had LS for years before getting a proper diagnosis and at that point my skin was very thin and I expect my dermatologist wanted be conservative in her approach. In other cases, if the woman has thicker or less fragile skin a more aggressive treatment might be suitable. I would ask Why a given treatment is being recommended for you. Also, if a little bit will do the trick, so much the better, why use more. If a little bit doesn’t do the trick, time to re-evaluate.

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At my recent appointment I was told to use a "pea-sized" amount of the clobetasol. My dilemma now that I'm in remission is whether to continue the twice a week treatment or use the clobetasol only when I have a flare-up.

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3 replies
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marquis113 | @marquis113 | Dec 1, 2024
In reply to @ronag "At my recent appointment I was told to use a "pea-sized" amount of the clobetasol. My..." + (show)
Profile picture for ronag @ronag

At my recent appointment I was told to use a "pea-sized" amount of the clobetasol. My dilemma now that I'm in remission is whether to continue the twice a week treatment or use the clobetasol only when I have a flare-up.

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I was told it was a lifetime treatment

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rashida | @rashida | Dec 2, 2024
In reply to @ronag "At my recent appointment I was told to use a "pea-sized" amount of the clobetasol. My..." + (show)
Profile picture for ronag @ronag

At my recent appointment I was told to use a "pea-sized" amount of the clobetasol. My dilemma now that I'm in remission is whether to continue the twice a week treatment or use the clobetasol only when I have a flare-up.

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@ronag now that I am in remission I only use the Clobetasol when I have a flare up and during it. There is no need to use it while you are symptom free.

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rashida | @rashida | Dec 2, 2024
In reply to @ronag "I'm in the process of searching for a vulvar specialist. That's an amazing suggestion. Thank you...." + (show)
Profile picture for ronag @ronag

I'm in the process of searching for a vulvar specialist. That's an amazing suggestion. Thank you. I've also found this website:
https://www.lssupport.net/
where I saw an instructional video of how to apply the clobetasol. The physician mentioned 2-3 months of treatment is not uncommon. She also recommended sitting in a warm bath for 15/20 minutes prior to applying the ointment and thoroughly rubbing it in for about 90 seconds per area. I'm trying to follow her recommendations and most of the area is finally less red, less inflamed.
Anyone with other suggestions?

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@ronag I clicked on the link you gave and it has been changed to lssupportnetwork.org

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rashida | @rashida | Dec 2, 2024
In reply to @marcief "Hi! Yoni steam is also known as vaginal steaming (although technically it should be called vulvar..." + (show)
Profile picture for marcief @marcief

Hi! Yoni steam is also known as vaginal steaming (although technically it should be called vulvar steaming). Proper steaming conditions will not burn nor scald you. My bestie instructed me to boil a stock pot halfway full of water and put it on the stove to boil. As it comes to a boil, add your herbs, put a lid on the pot, and steep for 5 minutes. Place the pot in your steaming chair, and sit on your chair for 20 minutes.

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@marcief I’ve never heard about yoni steaming or a steaming chair! What does it look like? Is it like a site bath?

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rose66 | @rose66 | Jan 1 12:42pm

Hi, I have had lichen planus for a number of years then the symptoms got worse itching, burning, red, inflamed skin so bad I couldn't sit down for weeks.
The dermatologist treated me with several steroids some worked, some made it worse. I used clobetasol 3x a day for 6 -7 weeks until it was comfortable for me to reduce to 2x a day for 2 months. Adding vaseline helped. I don't think people realize how painful this condition is.
I was upset about using steroids so often, but it did help me in the end, so I continued to use the steroid.
The dermatologist biopsied the skin and diagnosed lichen sclerosus, which is treated the same, with clobetasol.

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